Category Archives: Mitotane

Nothing to worry about

Cancer, Mitotane, My Novel- Anne July 24, 2013 Leave a comment

Woke up at 4:30 this morning to check my iPhone for the email from DHMC letting me know that I have test results available. It was there and suddenly I was wide awake. So was Steve.

Sure enough, the CT scan report supports what my oncologist said—nothing to worry about–but I wasn’t reassured until I saw it in writing. Does this mean I don’t have confidence in my oncologist? Or am I just a pessimist, expecting the “other shoe to drop”?

Everyone says I have such a positive attitude. I try. Really, I do.

But I’m more of a realist than an optimist. And the prognosis for ACC is “grim.” “Dismal.” If you believe the medical journal articles.

DDT use in residential areas was banned on November 20, 1969, one day and 43 years before my surgery. Yet twice a day I take mitotane, a DDT derivative. As of today I am still Stage 2. And the mitotane is supposed to keep me there. So I am committed to ingesting it for as long as I can. Regardless of the side effects.

But all chemotherapy is poison so I don’t suppose I’m any more special than the thousands of other people who take it every day.

I feel as though my life has been put on hold since my CT scan last week. I’ve heard other cancer patients say their lives are broken down into the time spans between scans.

In the last week I haven’t worked on my novel except to change Lexi Rae’s name to Poppy. And in order to firm up Poppy’s age, I had to research the hippie movement. (If you want to know the connection, you’ll just have to read the novel. Once I finish it….) And that was where I learned the date that DDT was banned.

Hard to believe that I was just months away from meeting my husband. This February we will celebrate our 40th wedding anniversary. And celebrate it we will with a trip to Hawaii. We’re planning on flying from Arizona to Hawaii then taking a seven-day cruise around the islands. That’s the plan today….but we’re learning to go with the flow….

 

Back to Normal

Cancer, Family, Mitotane, Writing July 15, 2013 Comments: 2

Back to my regular schedule with Steve at work after a two week vacation (his first ever!) and the girls and families returned safely to Arizona and Virginia. Steve’s brother and his wife are staying at the cabin a while longer but four of their daughters and families have headed home to PA and Maryland. As wonderful as it is having them all here it’s such a whirlwind that I can’t help but feel a sense of relief now that it’s over. I imagine they all feel the same way.

It’s hard for me not to wonder if this will be the last 4th of July that I share with everyone. My daughter the PA chastises me when I even dare to voice such an idea. She says I need to accept that the surgery cured me—I no longer have ACC. And why do I take mitotane with all of its side effects she asks. She sounds like my oncologist.

There isn’t proof that a regimen of mitotane for Stage 2 ACC patients is beneficial. But the experts at the University of Michigan that I have decided to rely upon recommend it for three years.

So I am heeding their advice despite the spells of vomiting, diarrhea, and nausea that I experience, one of which I had over the holiday. I thought it was self-induced as I couldn’t restrain myself from eating the typical patriotic fare: hot dogs, macaroni salad, cole slaw, chili, chips and dip (instead of my usual Campbell’s chicken noodle soup and pumpernickel with cream cheese). And don’t forget the s’mores.  But who could resist those?

Turns out what I ate may not have caused it. My latest mitotane reading put me in the toxic zone so I am now on a mitotane vacation for a week!! And then I get to reduce my dosage by two pills a day. Anxious to see the impact on how I feel.

Eleanor from my writing group emailed me, asking how my writing was going before she acknowledged that with all of my family around I probably hadn’t done any. It’s heartening to have others come up with excuses for me, saving me the effort. My own excuse is that I have projects, too numerous to list, to catch up on. Since I’m not working, I should still have a block of time that I can devote to writing.

Yet which of my in-process writings will I work on? Wouldn’t it be nice to pick one and finish it?              

Turkey Dreams

Mitotane, Writing July 1, 2013 Leave a comment

Last night my first eight “testing the waters” blog entries were critiqued by my writing group. Their comments were encouraging but I can’t help wondering if it is sympathy due to my cancer… self-doubt always trumps being able to graciously accept compliments. John distributed samples of blog postings, which I read when I got home. Some were truly atrocious. I am confident I can produce something worth reading yet will my blog become my focus, taking time away from my “real” writing? I feel (hope?) that the blog will more likely prime the pump, dragging me to my laptop, away from my beloved HGTV. Yet this morning I am struggling with this post and only CNN is on with the volume down to 1.

thanksgivingdinner

I awoke this morning to a dream of a turkey dinner being prepared for me, Thanksgiving I think, and the cook was heating up the package of squash that I have kept secured in my freezer for months, not for a turkey dinner but in case I wanted to make squash soup.

 

Who am I kidding?

I have prepared so few meals since my surgery that it is more likely the squash will be heated up as is and eaten with a grinder from Village Pizza than that it will be transformed into an appetizing soup. I am certain the dream arose from our discussion last night about my post pitying my family for having to eat Thanksgiving dinner in the hospital cafeteria. It’s too early in the morning to be talking turkey—I haven’t had my raisin toast yet or my yummy mitotane/hydrocortisone/ondansetron/metoprolol/pantoprazole/loratidine dessert! Remember, magic resides in those pills.

Dow has dropped 353 points over the past two days. Ouch. Now that I am retired this means a heck of a lot more than it did when I was still working.

James Gandolfini dropped dead in Italy yesterday. Apparent heart attack. I, at least, am forewarned. A young woman on the ACC Compassion site has died. She was forewarned. I hope she was able to take advantage of her remaining time to squeeze in a full life, albeit condensed. Not likely if she was undergoing treatment.

Quality of life and all that.

Excuses

Cancer, Mitotane, Writing July 1, 2013 Leave a comment

Managed to get through the worst part of the day—taking my morning medicine, all 13 pills. I know there are those who take more pills than that but I used to take only three: one for my acid reflux, one for my high blood pressure, and one for my seasonal allergies. Still, those extra ten are magic and I try not to forget that.

It’s Father’s Day and Steve has gone golfing, his usual game at 6:30 a.m. on Sunday. It’s supposed to be my time to write. So far I have watched CNN, some HGTV, and back to CNN for Sonjay Gupta, then read the HGTV magazine, taken my medicine, texted Jesse, and now DIY is playing in the background as I finally sit down to write.

Are you getting tired of my excuses yet?

I am.

While I was painting the guest bedroom yesterday, I had some great ideas about my book (“Anne”). Unfortunately I couldn’t just put down the paint brush and dash to the laptop to get them recorded but that is exactly what I should have done as today they are just sort of vague but there’s enough of them left to work with. Except I just got another text from Jesse and she and the kids are on their way over so we can go to breakfast….Interesting that we are going out to a Father’s Day breakfast without either of the fathers…oh, and that I have already eaten a glazed donut and two pieces of raisin toast.

Magic Pills

Mitotane, Writing July 1, 2013 Leave a comment

It’s 5:30 in the morning and I’m rolling out of bed so that I can join my husband on the couch for coffee, CNN, and the weather before he heads off to work at 6:30. When I was working it was all I could do to get out of bed with enough time to perform my morning rituals and arrive at work by 8.That included eating breakfast in the car during my eight minute commute to my job!

You’d suppose that as soon as he heads out the door I would be firing up my laptop and start pounding away on my novel, the one that I have committed to finishing before I, well you know….

This is the novel I started back in 1986, a mere 27 years ago, definitely a lifetime ago. The one that my mother has asked repeatedly if she will be able to read it before she dies and now that is no longer the question we ask. So now, almost seven months after my surgery and a month following my retirement I am doing just that.

It’s so true what “they” say, those seasoned writers like Stephen King, you need to write every day as once you get out of the habit of writing it is nearly impossible to force yourself back into it. My daughter, the yoga instructor with a successful blog, allows herself fifteen minutes to tackle any project. If that is all that she can manage, she has at least achieved her goal. If she gets so wrapped up in it that she works on it until she absolutely has to stop, she has the satisfaction of knowing that she has far exceeded her expectations. It makes sense when you apply it to writing because once you’re fifteen minutes into your project ,you’ll probably not be able to stop. But still. Isn’t the hard part sitting down and starting, committing to those first fifteen minutes?

In addition to firing up my laptop, the hardest part of my morning is opening the refrigerator and taking out the milk container without looking at or smelling the food then extracting from the kitchen cupboard the pills that now sustain me. It’s hard because I feel fine before I’ve taken my pills after I’ve eaten my breakfast. Because I’ve decided that they are magic, the actual act of swallowing them doesn’t seem to cause any problems.

One In A Million

Cancer, Mitotane, Surgery, Writing July 1, 2013 Comments: 3

photo (1)

That’s me.

No, I didn’t win the lottery.

I have Stage 2 adrenal cortical carcinoma (ACC), an ultra rare, aggressive cancer with a grim prognosis that strikes .5 to two people out of a million annually. This is one time when you don’t want to feel special. I had surgery the day before Thanksgiving 2012 to remove my right adrenal gland, kidney, a piece of my liver, and resected my inferior vena cava (what in the world is that, I wondered. It’s the artery that returns the blood from my legs to my heart. Who knew?)

Not only did I miss Thanksgiving dinner, which I would normally have hosted at my house, but a Thanksgiving day trip to Atlantis in the Bahamas with my middle daughter and her family. We did make it there the end of March 2013 and it was a wonderful trip. Funny how when I was recuperated and able to eat normal food I craved turkey dinners, whether at a local restaurant or in frozen dinners due I am certain to being deprived of a real Thanksgiving dinner. I am not certain what I did eat for Thanksgiving dinner on the day following my surgery as the day of and most of the day after have disappeared from my memory. A good thing, I am told by my family who were unlucky enough to be there with me and forced to endure their Thanksgiving dinner in the hospital cafeteria. I no longer crave the turkey dinners as my cravings change constantly—what I absolutely had to eat a short while ago I no longer desire.

Except for carbs.

For the last few years my husband and I have tried to follow the South Beach diet principles and now all I want to eat are things off limits on South Beach: all carbs, including bagels, cinnamon raisin bread, pumpernickel, pasta, even the occasional toaster streudel.

Vegetables? No thank you.

It sounds as though all that ACC has done is impacted my eating habits. Nothing could be further from the truth. I am lucky in that my cancer is stage 2, even though the prognosis is that I have a 51% chance of living five years. I had several options for treatment, one of which was to do nothing, just wait for the results of my CT scans every three months. That didn’t really thrill me.

I am used to taking action, to being in control.

A remote second opinion from the University of Michigan recommended Mitotane, a DDT derivative, taken in pill form daily for three years. Although my oncologist at Dartmouth Hitchcock Medical Center did not support my decision, I went with the U of M recommendation. Rumor has it that only 20-30% of ACC patients benefit from Mitotane—how am I to know if I am one of those? Clean CT scans only prove that the cancer has not returned, not that the Mitotane has kept it from returning. Mitotane has extreme side effects, which prevents many patients (are there really many people making this decision?) from taking the drug. Because it also kills your other adrenal gland, you need to take hydrocortisone, which I have difficulty tolerating even though it does fuel my appetite and apparently my energy level.

The biggest decision of my life was to retire at the age of 58. (Sorry, Steve, marrying you wasn’t really a decision, it was a given.)

On the day I returned to work from medical leave after my surgery I gave my notice. That wasn’t part of our plan, just like cancer wasn’t. Steve was supposed to retire this year at 63 and I was to continue working until I was old enough to draw Social Security. So much for plans. But who wants to keep working, no matter how rewarding, when death looms on the horizon? Sure, we’re all going to die at some point but by the time you reach my age you assume you’ve got another 30 years ahead of you, especially when your mother is still alive and kicking—and I do mean kicking—at the age of 85. And I thought I could produce a lot of novels in those 30 years.

Now I am hoping just to finish the writings that I’ve already started.

Yes, writing is my dream and what better time to try to realize your dreams than when death is no longer just a concept but a very real possibility?

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